Remarkably, early palliative care was associated with statistically significant improvements in measures of quality-of-life1, mood2, and length of survival. Patients randomly assigned to early palliative care were less likely to receive aggressive end-of-life care3 and more likely to have documented resuscitation preferences (which is a major element of an advance directive). The study was conducted at Massachusetts General Hospital.

I first read about this study in an article in the New York Times, which also led me to a recent New Yorker piece by Atul Gawande, “Letting Go.” I once bought Gawande’s Better on something of an impulse (which is strange for me), and I enjoyed it, though I didn’t find it as profound as The House of God, which I happened to be reading at the time. Admittedly, it is not an entirely fair comparison.

In any case, I think Gawande’s latest New Yorker article is very effective at conveying a very important idea — that the modern institution of medicine struggles with the concept of death, and that patients suffer needlessly as a consequence. At least, that was what I got out of it. It is quite long. I suggest you read it for yourself.

Of the many responses to the piece, at once the most and least interesting was by Avik Roy, on the National Review Online. The author’s position is so willfully ignorant that one can only sit and marvel at the ferocity of cognitive dissonance necessary to sustain it.

Roy argues that Gawande “falls flat” in “[trying] to extrapolate public-policy recommendations from” the stories in his pieces, and points specifically to Gawande’s reference to the (demonstrably false) “death panel” accusation raised during the recent effort to pass health care reform legislation. In defense of “the understandable fear that Americans have that, in a state-run system, [end-of-life care] decisions won’t be theirs,” Roy writes:

“[i]n Britain’s National Health Service, for example, terminally ill patients are incorrectly classified as “close to death” so as to allow the withdrawal of expensive life support” (emphasis mine). (Roy)

As evidence, he offers (a link to another NRO article containing a link to) a Daily Telegraph report on the Liverpool Care Pathway (LCP), a report ostensibly written in response to a letter from a number of UK physicians concerned about the implementation of the LCP throughout the National Health Service (NHS).

To begin, there are a few key points to take away from the discussion regarding the LCP. The first is that neither the Daily Telegraph article nor the concerned UK physicians ever so much as suggested that the LCP facilitated the deliberate, premeditated withdrawal of care for budgetary reasons. Yet this is clearly the conclusion at which Roy intends his readers to arrive, given the wording of his accusation: “[action] so as to [outcome]” can only reasonably be construed to suggest that the action was taken with the outcome in mind, and the use of “expensive life support” gestures conspicuously toward financial considerations (and not at all toward the idea that perhaps such interventions are medically ineffective and cause suffering). In contrast, the concerns voiced by the physicians are essentially intrinsic to any discussion of death, because they are about the act of deciding whether someone is inevitably going to die. Such a decision is necessarily challenging and never as clear-cut as we would like, but more importantly, it is governed by the laws of nature, our understanding thereof, our ability to observe the human body, and how we define concepts such as life and death. It is not subject to legislation, except to a slight degree in the last criterion (though in any case, Roy is not discussion legislation governing the concepts of life and death, because no such legislation has recently seen serious discussion). The LCP was also recently revised, addressing some of the substantive criticisms directed at it, and the British Medical Journal featured an excellent (and refreshingly, fact-based) editorial on the LCP and the media frenzy surrounding it. I think I have established, then, that Roy’s reference to supposed efforts by the NHS to kill people to save money is not related to Gawande’s article, and indeed not even true.

Though he fails to establish any substance to the accusation of “death panels” even in the thoroughly socialistic NHS, Roy forges on with this gem:

But to Gawande, it’s not enough that other hospitals adopt [early discussions about end of life care] on their own. A provision in Obamacare was to provide government funding for doctors to have end-of-life discussions with their patients; to Gawande’s dismay, “it was deemed funding for ‘death panels’ and stripped out of the legislation.” The obvious question doesn’t seem to occur to him: Why do we need a government program to pay doctors to have thoughtful conversations about their patients’ eschatological desires — something they should be doing already, and that doesn’t cost a dime? (Roy)

I have a truly outlandish proposal for answering Roy’s question: RTFA. Usually reserved for seriously addle-brained posts in comment threads, the obviousness of this particular RTFA would make William F. Buckley turn over in his grave. In fact, I will spare Mr. Roy the (surely monumental) effort and post the contextualized excerpt right here:

Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do. (Gawande)

First of all, the notion that “to Gawande, it’s not enough…” is an utter fabrication. Gawande mentions the “death panel” idiocy to explain the continued lack of compensation for such discussions, and moreover, he does not ever state that federal legislation is the preferred (or even a practical) solution. Secondly, the idea that a physician’s time “doesn’t cost a dime” is complete nonsense. It is so obviously wrong that I don’t even know how respond to it; how can someone’s time be free? Especially a physician’s time? Gawande’s whole point is that the structure of financial incentives does not encourage physicians to take the (considerable) time necessary to really find out what someone wants. I thought free-marketers were familiar with this concept.

As if to compound his failure to read with failure to comprehend what little he apparently did read, Roy concludes vapidly:

There are legislative reforms that can help address these problems. But they involve reducing, not expanding, government control of the health-care system. They involve letting patients decide for themselves, with the aid of their doctors and their families, how best to negotiate their last days on earth. If a free country can’t be about that, it can’t be about much. (Roy)

Okay. Back to Gawande’s article, which clearly establishes the importance of discussing end of life care well before the moment arrives. Theoretical autonomy is nice to talk about, but real, substantive autonomy only exists if one’s wishes are carried out. As Gawande elegantly puts it:

All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want. (Gawande)

There is no such thing as “letting” someone make a decision that they cannot make independently. Perhaps more to the point, there is no sense in supposing that, as a population, patients and their families are capable of making and conveying these choices proactively, though it is not for lack of desire. Instead, as Gawande argues (but somehow Roy could not or would not acknowledge), it is necessary for physicians and health care practitioners in general to engage them in the process, and moreover that systemic changes are likely needed for such behavior to become the norm (for the reasons outlined in the article itself). It is rather astounding how little evidence Roy offers that he has understood or even read “Letting Go.”

And recall the findings reported by Temel et al., that palliative care is in a sense self-reinforcing; those patients placed in early palliative care were more likely to utilize it than those who were not. Are we to suppose that patients in the control group wanted to suffer horribly before they died? Or can we conclude, far more sensibly, that the presence of palliative support structures increased substantive patient autonomy by enabling them to realize their wishes? And finally, can Roy offer any evidence that less government control actually leads to greater patient autonomy? Consider two alternatives: legislation requiring the acknowledgement and enforcement of advance directives, versus the lack of such legislation. Someone will always control the health care system, and you are fooling yourself if you think it could ever be the patients and their families. At best, we can hope to find ourselves well and faithfully represented by those in charge, which is not coincidentally the same philosophy behind our system of government (though whether it lives up to this is a different question altogether).

Serious discussions about medical ethics, the structure of our system of medical care, etc. such as Gawande’s wonderful work are essential to improving life (and death) in the United States. They are discussions we must have, sooner better than later, and whether we want to or not. But the sort of fact-free drivel found in Avik Roy’s response contributes nothing to the endeavor. It would be great if conservative commentators such as Roy rested their arguments on factually sounder foundations, but of course, reality has a well-known liberal bias.

God speed the year of jubilee
The wide world o’er!
When from their galling chains set free,
Th’ oppress’d shall vilely bend the knee,
And wear the yoke of tyranny
Like brutes no more.
That year will come, and freedom’s reign,
To man his plundered rights again
Restore.

God speed the day when human blood
Shall cease to flow!
In every clime be understood,
The claims of human brotherhood,
And each return for evil, good,
Not blow for blow;
That day will come all feuds to end,
And change into a faithful friend
Each foe.

God speed the hour, the glorious hour,
When none on earth
Shall exercise a lordly power,
Nor in a tyrant’s presence cower;
But to all manhood’s stature tower,
By equal birth!
That hour will come, to each, to all,
And from his Prison-house, to thrall
Go forth.

Until that year, day, hour, arrive,
With head, and heart, and hand I’ll strive,
To break the rod, and rend the gyve,
The spoiler of his prey deprive –
So witness Heaven!
And never from my chosen post,
Whate’er the peril or the cost,
Be driven.

So before you start building your vault, a few points to keep in mind:

1. First of all, calm down.

2. There is still no compelling reason to believe that this strain, influenza A(H1N1)1, is significantly more virulent than a typical seasonal influenza.

Your run-of-the-mill flu season has a case-fatality ratio of very roughly 0.1%, or 32% of hospitalizations [1]. Let’s narrow that to the 19-to-64 demographic, which could be most susceptible to this current outbreak (an unusual pattern seen in pandemic flus and likely caused by an overly robust immune response in healthy adults [2]), and is least susceptible to the seasonal flu. Within that population, CFR is about 0.03%, or 7% of hospitalizations [1]. Past influenza pandemics have had CFRs of anywhere from 0.1% in the 1957 and 1968 outbreaks to 2.5%2 in the 1918 “Spanish flu” [3].

In contrast, the CFR in the case of influenza A(H1N1) could be anywhere from 3.1% (an upper bound, based on a maximum of 8 laboratory-confirmed influenza A(H1N1) deaths out of a minimum of 257 laboratory-confirmed influenza A(H1N1) cases worldwide, from WHO figures available at time of writing) to 0.0016% (a very conservative lower bound, based on an approximate hospitalization rate of 0.4% of all cases in the 19-64 demographic in a typical flu season [1], with which an attack rate was extrapolated from 2000 estimated hospitalizations in Mexico).

Using figures that are quitepopular in the press gives a CFR of about 7.5% in Mexico (some 150 deaths in 2000 hospitalizations, the latter very dubiously assumed to be equal to the number of cases). Because of the unreliability of the “suspected” case count in Mexico, I am not convinced that this particular CFR estimate is useful at all, even as an upper bound. It’s far more likely that the actual CFR falls somewhere between 0.0016% and 3.1%.

All of these numbers don’t tell us very much (except that it is highly unlikely that this is some epic killer virus), but that’s exactly the point. Just because (thanks in large part to the surveillance infrastructure put into place in the wake of the “avian flu” panic) this (potential) pandemic has been spotted, there is no reason to assume that we have any solid evidence suggesting that the virulence of this pathogen is particularly high. However, this may very well change as time goes on and as the situation becomes clearer, and it certainly does not mean that the virus is not dangerous.

3. Virulence is not the same as pathogenicity. Perhaps more precisely, the concepts are not the same, though the terms may often become scrambled in the fray. The salient point is that while influenza A(H1N1) has proven highly pathogenic (i.e. it is highly infectious and spreads rapidly), there is not much evidence to suggest that it is especially virulent (i.e. it has not been associated with unusually high mortality or morbidity). So while governments everywhere are preparing for the possibility of a pandemic, the severity of the disease (to wit, the “causing serious illness” criterion from the linked WHO document) is far from clear at this point. And hopefully I was able to convince you in Point 2 that there is as yet no reason to suspect any greater virulence from this strain than a typical seasonal flu strain.

4. Influenza A(H1N1) has a few key differences to Severe Acute Respiratory Syndrome (SARS) and influenza A(H5N1) or “avian flu”. For one, both SARS and avian flu were much deadlier; the SARS outbreak in Hong Kong had a CFR of about 14-17% [4], while the avian flu has a CFR of something like 14-33% [3]. However, avian flu never demonstrated efficient human-to-human transmission, which made it a very deadly disease that was unlikely to spread quickly. Likewise, SARS has never been observed to be contagious before the onset of symptoms, which significantly increases the likelihood that a person at risk of transmitting SARS can be identified by basic surveillance. Influenza A(H1N1), while appearing (for now) to be far less virulent than either of these two recent serious respiratory disease outbreaks, is also considerably more likely to spread rapidly and become pandemic.

A confirmed case of S-OIV infection is defined as a person with an acute febrile respiratory illness with laboratory confirmed S-OIV infection at CDC by one or more of the following tests:

real-time RT-PCR

viral culture

A probable case of S-OIV infection is defined as a person with an acute febrile respiratory illness who is positive for influenza A, but negative for H1 and H3 by influenza RT-PCR

A suspected case of S-OIV infection is defined as a person with acute febrile respiratory illness with onset

within 7 days of close contact with a person who is a confirmed case of S-OIV infection, or

within 7 days of travel to community either within the United States or internationally where there are one or more confirmed cases of S-OIV infection, or

resides in a community where there are one or more confirmed cases of S-OIV infection.

You can make of that what you will. It seems to me that there is probably no logistical barrier preventing health care entities other than the CDC from confirming the influenza A(H1N1) subtype, except for one reason or another it doesn’t count as “confirmed” unless the CDC does it.

6. When I first began considering and looking into the actual severity of the whole “swine flu” panic, I thought exactly the same thing that Obama said earlier this week: this flu outbreak (and likely pandemic) is, based on the information we currently have, a cause for concern but not alarm.

If there is one good thing that has come out of what is arguably a gross overreaction by the American media, it is a heightened awareness of the importance of public health and good hygiene. So remember kids, listen to the President and wash your hands.

1I have used the nomenclature preferred by the World Health Organization as of 30 April 2009.

2The 2.5% CFR figure for the 1918 pandemic, though almost canonical, seems highly questionable given the estimates of 20-100 million deaths at a time when the world had a population under 2 billion. In any case, data from that pandemic are likely iffy at best.

Michele Bachmann expresses a nonsensical, ideologically inspired and dangerous view that demonstrates a complete lack of understanding about America and its founding ideals. To call those who are critical of government policy and structural inequities that cause suffering (i.e. a failure to realize the ideals of America, whatever that even means) anti-American is not only profoundly idiotic, but smacks of the violently nationalistic attitude that empowered the most terrible regimes the world has ever seen.

It’s been a busy month. Presented a talk in lab and at the UW Honors Research Colloquium, and bringing a poster to the UW Undergraduate Research Symposium, had 2 papers and 2 midterms. All in the first 10 days of May.

I Puritani is next week; it will be the last opera of the season, and I don’t yet know for sure whether I will renew my subscription. Opera is a magnificent thing, but it costs a lot of money. It can be a difficult expense to justify.

Art itself, in fact, begs for justification. As long as it remains quiet, unoffensive, cute and trite, art draws no criticism, and indeed hardly any attention at all. Putting aside constraining definitions of art itself, what is its purpose? And more to the point, does expression have limits?

Wafaa Bilal’s minor modification of Night of Bush Capturing, in turn a modification by the Global Islamic Media Front (likely a media arm for Al-Qaeda) of Quest for Saddam, a game created by Jesse Petrilla, a conservative American citizen, drew great ire from conservatives in Troy, NY where Bilal was exhibiting his work (sorry for the complex arrangement of subordinate clauses). The ignorance and failure of reason here is staggering. The original American-made game perpetuates negative stereotypes and ignorant hatred of its targets; the Global Islamic Media Front modification simply turns it on its head, and reflects back upon us how inaccurate and harmful such portrayals can be. And Bilal, in placing his own likeness into the game, is expressing how easily the attitude of those orchestrating and supporting the Iraq War can contribute to the disillusionment and even defection of people who previously had nothing to do with Al-Qaeda. Such perspective ought to be valued, not vilified.

And what of Burma/Myanmar (it doesn’t matter which name is more “correct;” the politics of language is always problematic)? Does coercive humanitarian aid (a rather awkward and loaded construction) constitute a perpetuation of Western Imperialism? Many Colonial and Imperialist endeavors have been attached to ostensibly noble goals.

If nothing else, the hesitation of the United States to even undertake supply airdrops without the permission of the Burmese government highlights the utter hypocrisy and ruthlessness of the Iraq War.

On a lighter note, Nate finished building his computer. But Linux drivers… :effort:

Let us not wallow in the valley of despair. I say to you today, my friends, that in spite of the difficulties and frustrations of the moment, I still have a dream. It is a dream deeply rooted in the American dream. I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident: that all men are created equal.” I have a dream that one day on the red hills of Georgia the sons of former slaves and the sons of former slaveowners will be able to sit down together at a table of brotherhood. I have a dream that one day even the state of Mississippi, a state, sweltering with the heat of injustice, sweltering with the heat of oppression, will be transformed into an oasis of freedom and justice. I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character. I have a dream today.

It’s kind of surprising that it was only demonstrated in 2007 that humans have an RMS (i.e. we generate new olfactory neurons). Adult neurogenesis in both the SVZ (destined for the olfactory bulb) and the SGZ (destined for the dentate gyrus of the hippocampus), though especially the latter, has been linked in numerous studies to memory and learning.

While for the world I lament, some residents of this nation never cease to infuriate me. Theirs is the ignorance which plagues America.

Today the sixth year of the Iraq War begins (it has been five full years). According to Mr. Bush, the threat if the US withdraws is nearly the same as when we began – some fear-mongering about القاعدة. In effect, by his own admission, we have not appreciably reduced the threat to our “national security.”

Don’t let anybody make you think that God chose America as his divine messianic force to be – a sort of policeman of the whole world. God has a way of standing before the nations with judgment and it seems that I can hear God saying to America, “you are too arrogant! And if you don’t change your ways, I will rise up and break the backbone of your power, and I will place it in the hands of a nation that doesn’t even know my name. Be still and know that I’m God. Men will beat their swords into plowshares and their spears into pruning hooks, and nations will not rise up against nations, neither shall they study war anymore. I don’t know about you, I ain’t going to study war no more.

Two weeks ago I saw Seattle Opera’s production of Tosca. It is quite an amazing opera, and this production was marvelous, if not especially distinct. Greer Grimsley made an amazing Scarpia, and I definitely want that cloak from the Te Deum scene (of which no pictures can be found on the internet, sadly).

The United States House of Representatives has managed to maintain a strong stand against the lies and fear-mongering of the Republican party and the Bush Administration on the issue of retroactive immunity for telecommunications corporations. Of this I am glad, though often it seems as though not enough is being done. In this and many issues, it is exceedingly clear that ignorance plagues Americans. The case against retroactive immunity is so blatantly compelling that no informed citizen with a functional brain should support immunity; yet somehow it does not draw sufficiently widespread and scathing criticism as to kill the idea entirely.

Work finally begins on the Tbr2 project, focusing for now on the SVZ. Since this is really no longer my project it’s become considerably less exciting, but the pursuit of knowledge and other vague concepts remain intact.

A better understanding and awareness of history (and particularly the ability to think critically about such things) on the part of Americans would all but eliminate the possibility of a tragedy like the Bush Administration ever recurring. But that is nothing but a distant fantasy that will likely never be realized in this world.

Yet another area in which the United States of America leads the world. Americans sure do like being #1. I would write a paragraph or two on how terrible the system of “justice” is in the United States but I feel that this subject would more appropriately fall under Nate‘s “jurisdiction,” if you will.

In closing, I would appreciate any insight as to why the water in Drumheller Fountain was brown today.

It’s almost surprising that the White House and even those Republicans in Congress would be so stubborn about something that is so blatantly ludicrous. But politicking prevails, and the rights and interests of the American people are swept under the rug in favor of corporate interests and government power. These pieces highlight how completely full of shit this bill – and especially the Republicans’ insistence on passing it – really is.

Once again, the unrelenting idiocy/evilness of the right-wing politicians delivers what would be top-notch entertainment – if we weren’t living in it. Even more depressing is that there are people who agree with them.

Sometimes the batshit-crazy right-wingers invoke the ever-popular argument that the “Liberals” are not thankful for these rights that our soldiers are so valiantly “defending.” The truth is, we are thankful enough for these precious rights that we bother to use them. Only someone without a functioning brain could conclude that the only appropriate way to express gratitude for our rights is to give them all up.

My wallpaper and I are fighting a duel to the death. One or the other of us has to go.

Apparently we are collaborating with a lab in Germany on the Tbr2 OB project, something which is entirely news to me, and Rebecca is also now onboard with the project. So this very quickly went from a little inconsequential project of mine into a much more substantial piece of research in which I will play an appropriately small part. Nice.

Everyone in WA should go caucus tomorrow. Even though (or because?) it sounds a little naughty. And in spite of the ludicrosity (though my dictionary doth protest, this should be a word) of the way elections work in Great Nation of America.

After/while listening to Mitt Romney deliver his spiel before announcing that he would suspend his bidgive up, I decided that I really just don’t “get” those millions of conservatives in America. I mean seriously, are they delusional? Have they never actually encountered the real world? The platforms that these conservatives run on are constructed entirely out of fantasies and ridiculous claims. For instance, Romney said something about American “culture” being attacked. I wonder if any of his supporters can even tell us what American culture is. There are some really ignorant people in this country.

FBLEND looks like it’s about to rock your world. Well actually it won’t, but it will rock some sociologist’s world (and with any luck, more than one) and that’s really all that matters, right?